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Thursday, March 7, 2013

College, Blood Stuff and New Thoughts

Hello friends! It's hard to believe my last post was almost a year ago! I sincerely apologize for that. :( It turns out that the summer before you start your college experience was way more stressful than I imagined.

Despite the stress of that summer, however, I have officially made it to college! I'm living about 6 1/2 hours away from home in a huge city where I attend a small but fantastic University. :) This is my second semester, and as I sit here writing this post in our student center, I'm reminded of the fact that it's only been a few months despite the fact it feels like I've been here a lifetime.

This is a picture I took whilethe nurse was drawing blood :)

But this isn't a Jamie's-personal-life-and-college-experience blog ;), so I'll get back to blood and all that jazz. :)

One really great thing about living in this city is that I'm actually about 20 minutes away from a treatment center! Back home, we had to drive at least 5 hours to get to the nearest HTC, and they were only pediatrics, so we knew I'd have to find some other place after I turned 18. So I came here.

My first appointment was in August, only a few days before move-in at my school. It went really well and I got a lot of questions answered, and it's just nice to know that they're right there in case of any emergencies. Or just in case I want to come in and have something checked out. I had some blood drawn and was completely finished within about 5 hours.

So far, being in college hasn't presented that many difficulties that are VWD related. I have some ice packs in my fridge, some heavy duty bandaids and gauze pads, two ace bandages and some Celox in my first aid kit. During my first semester I started running with my roommate and our other friend, but my knees really started to hurt and it got to the point where putting ice packs on them after a short run wasn't doing anything. This was probably one of the few times I've been really frustrated with the fact that my bleeding disorder has interfered with exercise. I'm not a sports person, I'm more of a sit-down-and-read-a-book-and-then-go-play-piano kinda gal, but running at our Wellness Center with my friends was something I was really starting to enjoy. It was annoying and embarrassing to run for about 10 minutes, feel the pain in my knees and then have to stop. So no more running for me. Honestly, the pain wasn't too unbearable, but what really scared me was the possibly of a joint bleed. I've never had a joint bleed before, but I've heard stories and seen pictures and I can't afford something like that when walking is my only form of transportation to all of my classes. I made a mental note to ask about running and joint health the next time I had a HTC appointment.

I have done Zumba a handful of times before, however, and that seems to be working out really well. It's fun exercise and I've never experienced any abnormal soreness or pain after an hour or so of doing it. I'll probably stick with that when I have some time to squeeze in an hour at the gym after classes. :)

My only other VWD-related mishap occurred a few weeks ago when I was in the shower. I cut my knee while I was shaving but it was so small that I didn't think anything of it. I rinsed it off in the shower and the cut was tiny. It looked more like I'd just picked a scab or something. Anyway, I'm focused on rinsing my hair and all that stuff when I look down and see an abnormally significant amount of blood running down my leg and into the shower drain. This made me think twice and I examined the cut again, only to conclude, once again, that it wasn't that big. Anyway, long story short: it didn't stop bleeding and I had to ask my roommate to bring me a bandaid because I was afraid of getting blood on the carpet of our dorm. (Side note: my roommate is a nursing major, so that's pretty spiffy. (: ) She brought in the bandaid and I managed to change into my pajamas when about 2 minutes later I notice that I've completely bled through the bandaid and blood is, again, running down my leg. So I pull out the gauze, fold it into a thick piece and then stick it onto the cut using a waterproof bandaid as medical tape substitute. No surprise, I bled through that pretty quickly as well. Turns out that it didn't stop bleeding until the next afternoon. The most annoying part of this was that I was constantly checking my jeans during and after class for blood stains and I had to change the gauze about every hour and a half. Honestly, I've never had a razor cut bleed that much. It freaked me out just a little bit, and I don't know if the location of the cut had anything to do with it or if my blood was just choosing to be more defective than usual. If any of y'all have had similar experiences, I'd love to know how you stopped the bleeding. :)

So those are my two "big" incidents. Not too bad at all. :) I'm hoping to get through all 3 years without any significant problems, but we'll see. :)

Being away from home and off at school has made me realize how truly independent we're all becoming. And I've realized that managing your chronic disorder is just another part of life. We're not that different from everyone else, because everyone has something that they have to learn to manage. For us, it's blood that doesn't clot, for other people it's an assortment of different problems and issues. But we get through them. We have to, because they shouldn't slow us down. Not even a little bit. :)

So, those are my "new" thoughts. Not sure how original they are, but it's my 2 cents worth. :)

Are any of you in college or about to graduate? I'd love to know how you handled your bleeding disorder through these years of living away from home! Any tips or suggestions? Or, for that matter, any warnings? Everything is useful and I know we could all benefit from each other's experiences and thoughts! :)

I hope you're all having a wonderful week and, for my fellow students, a wonderful semester! Leave your thoughts in the comment box below!

3 comments:

Jamie... I can't remember, can you use stimate (desmopressin)? My oldest granddaughter (I have custody) is a freshman in both high school and college, although she lives at home, she is only 13 lol. She cuts herself shaving occasionally, and sometimes, for whatever reason, leg cuts bleed like that. She uses stimate and fortunately, is responding so far, although the response seems to be getting less effective. We are headed to HTC soon to see hemoc and will see what she says. VWD type 2M

Dawn, unfortunately I don't respond to DDAVP. :( They tested me and my factor levels went up, but nothing changed. This was actually what made them question whether I was type 1 or type 2 because the deficiency seems to be qualitative. It's a pain because I can't take anything for minor bleeds. :p But I'm glad your granddaughter finds stimate helpful! Thanks so much for your comment! :)

Hello! Its great to hear your doing well away from home with VWD. I attended art school not so long ago in nyc with the same disorder. I had my fair share of odd events but ive also had shin and knee pain. And i am also a book worm. For me I started getting shin splints from doing too much at once. Make sure you have good shoes or supports in them if your running. Also I make a habit of stretching 20 minutes before any exercise (try everyday when you wake up). Yoga helps too. Anything that can build strength in your feet and get your blood circulation going.

Welcome!

Hi there! Welcome to "GwBD"! :) This blog is here as an online support group and a way to connect/share with other girls who have bleeding disorders! Stay a while and browse through the different pages and posts. :) I hope you leave feeling confident that you're not alone in this battle.

Have fun & much love! <3

World Hemophilia Day 2013

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"I can be changed by what happens to me. But I refuse to be reduced by it." -Maya Angelou